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Everything posted by Ashley

Another therapy approach that pretends to be new and different, but is actually CBT based and I actually don't see how it differs much, if at all from CBT understanding of the problem (or rather how a good CBT therapist that understands OCD would approach it.
Try it, if it helps great.

A lot of press coverage for Pure in the last week, and many of them attempted to describe Pure O and the vast majority (in fact all of them) got it wrong. Our responses to those - https://www.ocduk.org/pure-o-the-facts/
Thank you again to Gemma for her help compiling this.

It's important to remember that Pure was just one person's story with OCD, what she felt and experienced doesn't mean other people with OCD would feel the same as that person or that others can relate to her. I had my support group last night and we had 10 people in the room, and at times I am sure some in the room couldn't always relate to others. That's ok, because with OCD we're all different.
The constant doubts and uncertainties you express on here are perhaps a symptom of OCD in itself. As was the need to watch to compare feelings (compulsion - which is why I hate the term Pure O as a side note).
Until you're told otherwise by a mental health professional, continue to assume you have OCD would be my advice.
Stay strong

Thank you for your replies guys, and your responses are all generally what I would have expected, but you've also offered some good clarity to out into context, so thank you for that. Whilst researching I have stumbled across some fascinating stats from Mind surveys which again back all this up, which once I collate I will share with you.
If anybody's had any experiences of being offered non evidence based treatment for any mental health problem I would be keen to hear your thoughts on that.

Hello Gang,
Happy New Year..... not sure I have said that yet.
Later in the spring I have been asked to talk at a conference about effective care and treatment and share my views as a service user with reference to evidence based treatments (not just OCD, i.e. depression, anxiety etc).
As I try and formulate the focus of my talk I just wondered what you guys thought on the subject.
When you seek treatment, are you expecting (initially) to receive treatment that is evidence based?
Would you want the health professional (GP / therapist) to make you aware of non evidence based treatments?
Is being informed about the evidence base for treatment A over treatment B helpful or not?
Is your understanding of the expected treatment helpful? (so if you understand CBT, and seek treatment you can recognise if you're just receiving the B part, common (or just the C part, less common but not unheard of)?
Your thoughts are welcomed, along with any examples I may be able to use within my presentation (can be anonymous).
Thanks.

NICE are currently consulting on a proposal to update the NICE Guidelines for the treatment of OCD. As a stakeholder they have invited us to respond to several questions. But our views, need to reflect your views. Please help us by sharing your feedback - https://www.ocduk.org/nice-consultation-2019/
For some reason, their consultation period is incredibly short. So if you wish to send feedback please respond to us by Sat 19th January at the latest. The NICE Guidelines cover England and Wales.
Thank you to Gemma for helping me put the feedback form together.

One of the presentations from our 2018 conference is now online via our website.
https://www.ocduk.org/features/making-a-molehill-out-of-a-mountain/
When time allows me I will make the rest of the amazing conference presentations will be made available to OCD-UK members later this year via the members area (no time-frame for this I am afraid).

The parents and family of children with OCD are often the forgotten amongst therapeutic interventions or frequently left to manage their child’s OCD without any support whilst on long waiting lists. OCD-UK want to do more to give parents better support and address some of their needs in a collaborative project next year. In order to ensure we meet your needs, we’re looking for input from parents and/or families of those who have a child (under 16) with OCD.
So as a parent (or family member) of a child with OCD, thinking about all the problems and questions that you had/have managing and supporting your young person with their OCD, what are your top three priority areas you would have welcomed help? Please list up to three:
First Priority.
Second Priority.
Third Priority.
Some examples of common areas of interest that parents reach out to OCD-UK for help, which might be some of your own priorities (or you may have others of your own).
A NHS/OCD-UK workbook for parents whilst waiting for therapy, (offering OCD education and preparing the child for therapy).
Regular (monthly) opportunity perhaps in a brief group drop-in to ask questions of NHS therapists, especially whilst waiting for therapy.
Opportunity to share with other parents (support group like the forum but in other format)
More information and guidance about OCD from a parents perspective about how to handle various OCD situations... like a Q+A section on the website.

Exclusive news for OCD-UK members.
I understand there will be a new specialist anxiety clinic, with a specific focus on treating OCD, opening its doors in Oxford during early 2019. Our understanding is the clinic was formally approved and they are now in the process of formal recruitment of staff in time for an official launch, expected by the end of the first quarter of 2019.
Because there are no admin staff or even a clinic name at present there is no formal referral route at this time. Our understanding is the clinic will be CCG referral only (you will need your local NHS to agree to refer/fund treatment), and they will accept patients of all ages, including children. Treatment will also be tailored around the individual to offer routine outpatient, intensive (outpatient) and even home based where applicable.
I will keep you in the loop on developments… but you heard it here first!!!!

Tis the season to be jolly and for OCD to hit the stores... in the form of Obsessive Christmas Disorder and the like. As you may have seen on social media a few offenders at present.
TK Maxx - Selling OCD Obsessive Cake Biscuit tins
Called them yesterday and they were aware and were in the process of collating all stock codes (they even told me they found more offending items) and will send the list to all stores to ask they remove and return, where they will most likely destroy the stock. - They listened and acted, we can ask no more.
Touch of Glass - Obsessive Chocolate and Cat Disorder
Not sure this is a retail chain but a pop up that appears in shopping centres. Spotted by a member who complained at the time. Her subsequent tweets led her to being blocked. I sent this polite (for me) tweet and sent an email which earned me a block too. Through the charity account, Kirstie (well I posted with her permission) posted this tweet which also earned the charity a block, as have many others (even those sending polite tweets).
These are the two offending products - https://www.touchofglass.uk.com/online-store/search%3Fkeyword%3DOCD%26offset%3D0%26sort%3Drelevance
I don't lambast retailers for original mistakes, I try and educate them and try and negotiate an end to future selling of such products. All I needed was Touch of Glass to offer to stop stocking once current stock expires, I would have accepted that compromise. But to not engage any of us and block us all is pretty naughty. If anybody sees them in a shopping centre please let me know and maybe we need to write to the shopping centres to ask them to take action.
notonthehighstreet.com
Not entirely sure what the offending products are, Catherine one of our members is following this one up for me. She forwarded an email last night saying they are reviewing and suggests they will remove such products. So for now I am going to give them time to review and do that.
(Edit - Found Catherine's links)
1. https://www.notonthehighstreet.com/lolaandgilbertlondon/product/ocd-pouch?istCompanyId=aa76f5e6-d733-4e56-8409-574cea196cc9&amp;istItemId=xmxqqxpiir&amp;istBid=t&amp;DGMKT=FID__TID_aud-317724568502:pla-352021349945_PID_469922&amp;gclid=EAIaIQobChMI_e_Sup7y3gIVbZPtCh0AYA7iEAQYASABEgJyqvD_BwE
2. https://www.notonthehighstreet.com/perfectpersonalisedgifts/product/personalised-ocd-obsessive-christmas-disorder-mug
Etsy and Zazzle
As above, Catherine dealing, but so far no joy from what I understand.
Let us know of others.
Moving forward this cant continue, so I have come up with a project plan of action which I will try and get clear in my own head today and update on tomorrow.

Hi Emsie,
I have had a look, and I think the medication pages on NHS Choices for all the SSRI's seem to have changed slightly. I have re-read our advice and I think I agree with you. Whilst I do think the text we have is right, it could be written better. Is that something you fancy having a go at rewriting for us? I think you have my email Ashley

And so it goes on... and on.
I have spent hours this week contacting numerous retailers and one radio station. Some are listening and acting, some are reviewing. A couple of journalists are sniffing around but I have refused to comment on individual retailers whilst they have agreed to review.
I now have a spreadsheet of offenders, a mix of green (resolved) and red (still offending).

Well sorry you went through that, but let's avoid scaremongering. For many people (including the original poster) they find SSRI medication helpful and your experience does not indicate it will be shared by other people taking the same.

Hi Dawnie,
I am afraid none of us are doctors so we can't really answer questions about medication. The problem is you touch upon there is no exact science to dosages, what medication works for person A will cause problems for person B. What dosage works for person A, may not help person B. Medication is very much trial and error.
The problem is, if your symptoms are tolerable, increasing medication won't necessarily suddenly make them even more tolerable. The recovery will only come through prolonged therapeutic work.
We have some information here (via NHS Choices) - https://www.ocduk.org/overcoming-ocd/medication/sertraline/

Latest IAPT annual report (2017-2018) published this week. Shame to lost the Excel table of data, new way to display is harder to search. Chart below shows the 'alleged' figures for those with OCD finishing treatment. Call me sceptical that 48% reached some kind of recovery. But significantly 15% (3375 people) showed no change. That in itself bad, but poor IAPT experience will have put some of those people off seeking further treatment. As for 3% (608 people) showing deterioration, not all will be IAPT fault, some of those should not have started IAPT in first place which means we need better pathway interventions, some will naturally get worse of course. But I know from talking to people, some did get worse because of poor IAPT therapeutic intervention, and that is shameful and needs to change.

Good questions friends... this is what the IAPT report states:
Recovery
Recovery in IAPT is measured in terms of ‘caseness’ – a term which means a referral has severe enough symptoms of anxiety or depression to be regarded as a clinical case. A referral has moved to recovery if they were a clinical case at the start of their treatment (‘at caseness’) and not a clinical case at the end of their treatment, measured by scores from questionnaires tailored to their specific condition.
Reliable improvement and reliable recovery
In addition to recovery, there are two other measures of outcome in IAPT: reliable improvement and reliable recovery.
A referral has shown reliable improvement if there is a significant improvement in their condition following a course of treatment. This is measured by the difference between their first and last scores on questionnaires tailored to their specific condition.
A referral has reliably recovered if they meet the criteria for both the recovery and reliable improvement measures. That is, they have moved from being a clinical case at the start of treatment to not being a clinical case at the end of treatment, and there has also been a significant improvement in their condition.